cover

Contents

Cover

Title Page

Copyright

Dedication

Preface

The Chief of Bioethics

Acknowledgements

Caution 1: Tip-Toe When Walking on the Bleeding Edge

Case 1 The Dangers of Creating Life in the Lab

Case 2 Design: More Intelligent Every Day

Case 3 “Shroom” Science: Safe and Effective?

Case 4 A Robot Code of Ethics

Case 5 No More Periods, Period

Case 6 Search Me, Shape Me, Any Way You Want Me

Case 7 A Bloody Mess

Case 8 Stem Cells: The Goo of Life and the Debate of the Century

Caution 2: Everybody Lies

Case 9 Lies, Damn Lies . . . and Scientific Misconduct

Case 10 Conflict of Interest Means Business at NIH

Case 11 While You're Here, How about a Spinal Tap?

Case 12 Study Subject or Human Guinea Pig?

Case 13 The New Tuskegee: Exploiting the Poor in Clinical Trials

Case 14 Salt in the Wound: Will India Rise up Against the Oppression of Foreign Clinical Trials?

Case 15 Dr. Hwang and the Bad Apple Theory of Scientific Misconduct

Caution 3: The Genome Isn't What It Used to Be

Case 16 Becoming Genomic: Just What Does it Mean Anyway?

Case 17 Enhancement Comes from Insecurity

Case 18 Wearing Genes from the Gulf War

Caution 4: Reproduce at Your Own Peril

Case 19 Tomorrow's Child: Making Babies in the Twenty-First Century

Case 20 An Argument against Human Cloning

Case 21 Two Genetic Moms: High-Tech Trouble or Double the Love?

Case 22 Grave Robbing the Cradle

Case 23 Baby Banking

Case 24 Cash Strapped American Fertility Docs Cry Out for Mercy

Caution 5: Don't Sweat the Nano-Sized Stuff

Case 25 “Nanoethics”: The ELSI of Twenty-First-Century Bioethics?

Case 26 The Devil and the Deep Blue Sea

Case 27 The Merging of Man and Machine

Case 28 My Eye's on You

Caution 6: The State Will Protect Your Health Right Up Until It Doesn't

Case 29 Has the Spread of HPV Vaccine Marketing Conveyed Immunity to Common Sense?

Case 30 Is the New Cigarette a Smoking Gun? Eclipse Unethical, Unregulated Research

Case 31 “Universal” Healthcare: A Long Way Off

Case 32 Newborn Screening with a Twist

Case 33 HIV Testing Must Be Routine

Case 34 Re-creating Flu: A Recipe for Disaster

Case 35 Pandemic Influenza Requires Trust in Government Healthcare

Case 36 A Hostile Environment for Environmental Protection Documents

Case 37 To Quarantine or Not to Quarantine, Is That the Question?

Caution 7: “Do No Harm” Has Become “Care for Yourself ”

Case 38 Medicine Is Not a Steel Mill

Case 39 Does Your Doctor Have Skeletons? Good Luck Finding Them

Case 40 Medicine's Dirty Laundry

Case 41 Dr. Koop: Meet Dr. Ethics

Case 42 Organ Donation: Why Isn't There an App for That?

Case 43 Docu-Medical Shows Lack Reality

Caution 8: You Aren't Dead Until Someone Tells You So

Case 44 Redefining Retirement: Beyond Rest and Recreation

Case 45 Medicare Is Going South: What Do We Owe the Aging?

Case 46 The Fight to Die Well: We Will Expect More from Death Than Our Ancestors Did

Case 47 The Case of the Body Snatchers

Case 48 A Few Conclusions from the Terri Schiavo Case

Case 49 Living Wills Save Money? Dude, Did You Really Say That Out Loud?

Case 50 The Plural of Anecdote Is Not Ambien

Caution 9: Eat Only Food for Thought

Case 51 Fat in America

Case 52 Breakfast for Thought

Case 53 Want Fish? Ethics First, Please

Case 54 Dying for Food

Caution 10: Beware of Ideologues and Demagogues

Case 55 Bioethics for Christians, Corporate Whores, and Atheists

Case 56 Pharma Owns Bioethics (and Other Fables)

Case 57 The Kevorkianization of Cloning

Case 58 Not in the Bush Leagues Anymore

Case 59 Professor Hurlbut, Your 15 Minutes Are Up

Case 60 The Heady Days of Proposition 71: Stem Cell Research in the California Sun

Conclusion: Move Slowly and Stay Cool

A Hot and Cold Running Genius

Science Must Slow Its Speed

Sources and Credits

Case 1

Case 2

Case 3

Case 4

Case 5

Case 6

Case 7

Case 8

Case 9

Case 10

Case 11

Case 12

Case 13

Case 14

Case 15

Case 16

Case 17

Case 18

Case 19

Case 20

Case 21

Case 22

Case 23

Case 24

Case 25

Case 26

Case 27

Case 28

Case 29

Case 30

Case 31

Case 32

Case 33

Case 34

Case 35

Case 36

Case 37

Case 38

Case 39

Case 40

Case 41

Case 42

Case 43

Case 44

Case 45

Case 46

Case 47

Case 48

Case 49

Case 50

Case 51

Case 52

Case 53

Case 54

Case 55

Case 56

Case 57

Case 58

Case 59

Case 60

Conclusion

Index

Title Page

For Summer

Preface

The Chief of Bioethics

A Bioethicist is not a sheriff. That's a good thing.

My children have no idea what I do. According to my eleven-year-old, bioethics is not a job, it's where I am before I come home and what I do on my computer. That I am editor of a medical journal means little to him, because he is quite sure that this means that I spend a bunch of time writing a magazine with no pictures. When I describe research about parenthood, or genetics, in what I assume to be eleven-year-old speak, he looks at me as though I must be avoiding the grading of papers, what real teachers do. My nine-year-old is more pragmatic: “What did you do today, Daddy?” Well, I wrote a bunch of emails, talked to a bunch of people, and stared at a legal brief designed to preserve patents on genetic information. “Oh, so you sat around. Why didn't you just come home?” They've heard of bioethics, and they hear Daddy talk on the radio or see him on TV. But it sounds just like the talk on the phone. My father was a professor, and I knew what he did. He taught and graded papers. The sole evidence, to my kids, that I do a job is that I have had badges. Various ones, tossed on tables, from conferences. But one in particular, issued to me in 2005 by New York State's public health labs, is the kicker: it identified me as “Chief” of the labs' Office of Bioethics. When he saw it, my son patted me on the back for finding a real job: he thought I was a police chief. I must have been protecting someone.

The point of this story, or at least my point, isn't this father's instinctive need for the respect of his sons. It is that my sons are not all that different from the rest of biomedical science and society. After forty years, bioethics is still an enigma to the NPR-listening crowd, and all-too-often revered by the “public” only when it purveys ideology or polices misconduct. The research that we do, the cases on which we consult, the changes in healthcare that have come from involving the people who are sometimes called bioethicists, are lost to almost everyone but the few academics, media, and policy wonks who read our work or participate in our consultations or ask us to work with them on a project with ethical implications. And that is a problem. Most of the broadly read articles about bioethics, some authored by ethicists themselves, have castigated bioethicists for being too heavily indebted to industry, or for being irrelevant, or for refusing to take stands in a coherent way, even about our own standards for good practice in our field. Bioethics has become one of, if not the, fastest growing academic disciplines, and there are more students aspiring to work in the field than one could ever have dreamt. But the role of the people who work in the field is incomprehensible to most unless it is framed as “fireman” or “professor.”

Success is sometimes a curse. The presence of bioethics in virtually every major debate about social values has made it more difficult to explain why bioethicists, whomever we are, cannot explain what it is that we actually do, how to recognize when we are doing it well, or that there is a difference between providing expertise about ethical issues and being a moral superhero. How can any scholarly field be broad enough to address – indeed, be at the center of – debates over Terri Schiavo, stem cell research, the rationing of drugs for a pandemic or respirators after a hurricane, the risks of clinical research, the sale of human organs, the creation of artificial life, and the role of physicians in torture?

In the forty years since American biochemist, Van Rensselaer Potter, it would seem, coined the term, interest in bioethics has spawned hundreds of institutes, more than a dozen journals, and many degree-granting university programs. But neither bioethics' practice nor those styled as practitioners are defined in the same way by any dozen people outside academia. Even academics are split on whether bioethics is in exile from philosophy departments or a subspecialty of medicine or something else altogether. Colleagues, bosses, students, community groups, and potential donors ask whether bioethics involves real scholarship and teaching, or if it is merely a shill for regulatory, corporate, or political interests. Even those of us who work in the field are divided on whether bioethics is a discipline, whether we should have certification (badges, anyone?), and whether there is the need for a code of ethics for ethicists, as though those who work in bioethics are not content experts but rather ethical “superheros” whose own moral lives are the measure of their ability to teach. We don't even discuss that for members of the faculty of departments of religion, though, the annual meeting of the American Academy of Religion and of the Society for Christian Ethics, have been described as having the character of frat parties. A colleague of mine once said that academics who work in ethics across the field, in fact, typically choose as their area of expertise, however unconscious the choice, that area of study that least corresponds with the mores that guide their own life: the man who studies the ethics of character has none, the woman who writes about empathy could care less about those around her. Society knows just enough about ethics to trade in the silly supposition that the study of an area presupposes a superhuman moral life. I certainly hope that isn't a fair standard, because I for one am a human scholar.

There are as many ways to parse the jobs and activities of bioethicists as there are problems under study in the field. Many use the title to describe or advertise their work. Those who write in the peer-reviewed journals of bioethics, teach and work in institutes devoted to the subject, and are members of the key organizations, clearly qualify for the appellation. Scholars in bioethics now have a huge impact on science and medical policy, and those who pretend to be bioethicists in order to put that mantle on their political or religious arguments, do so precisely because they recognize the increasing importance of the field.

At a time, however, when political columnists, fundamentalist zealots, and untrained aficionados not only call themselves bioethicists but also are eligible to work on a presidential commission on the subject, many of those who should be calling themselves bioethicists in virtue of their training and scholarship instead repudiate that label. Though tempting, it would be a mistake to recoil in horror as bioethics becomes politicized. A good sign of the health of bioethics, in fact, is the healthy debate and political action elicited by bioethics scholarship. It would be bad news indeed for the future of debate about ethics in medicine and science if no one cared about the controversial conclusions reached by those who study and write in the area. And that bioethicists engage in politicization of their field seems understandable as well – as long as it is clear that they do it off the clock.

I'll admit, there's a certain allure to the idea of a job that my child can understand. But I know there is something that they definitely understand: rules. Rules define the moral scope of the world in which we live, they guide our thoughts and actions, they prescribe the limits of how we should interact with our peers, patients, and the public. Without rules, we would live in anarchy and without consequences for ignoring those rules, we would be left to act on our most base and opportunistic impulses.

My “chief of bioethics” badge really is an artifact of a time when bioethics had to be explained not only to children but also to funding agencies, the media, and policymakers. We no longer live in that time. Today most leaders in science and medicine know that bioethics, properly understood, isn't a police force, a task force, or the product of a president's commission.

But it is about providing guidance, when needed but not always when invited, to those at the cutting edges of science and medicine. Giving them the green light (morally speaking), noting when proceed with caution, or reminding them that speed can be deadly. Bioethicists are not an elitist, powermongering, or advocacy-based group, but instead we depend on a symbiotic relationship between researchers, practitioners, policymakers, and the public. And out of that relationship we strive to make the outcome of our collaborator's work more justifiable, reasonable, and fair.

All appearances to the contrary, the explosion of interest in bioethics and even the groping to be called a bioethicist represent a recognition that the field of bioethics is coming of age. As are my children, all of whom – even the 17-year-old – understand the value and importance of rules, even if they rarely follow them.

This book, too, chronicles the misteps and the successes of some of medicine and science most important events in the last decade and from these articulates the “new rules” for ethical science and medicine in the twenty-first century.

Acknowledgements

This book is the result in large part of the editorial, advisory, and audience response input of dozens of people in science and medicine, including those who attended countless lectures and those who have been forced to edit the essays herein for publication. Equally, a team of my very generous peers participated in congealing from a variety of my activities in translational medicine what I hope is a coherent and underlying thesis: that at the beginning of the era of highly mixed, personalized genomic medicine, when we no longer know how to describe creation or death and our powers have increased almost as fast as those of our computers, wisdom will come not from “intuitive fear” of the future but from a pragmatic look at the past and at the goals inherent to our human natures.

Actively involved in the preparation of the manuscript, among others, were co-authors of some of my work, Arthur Caplan PhD and Summer Johnson McGee PhD.

Researchers and editors included Kelly Hills, Jessica Stanley, and Miriam Aziz.

David Magnus PhD provided assistance both as co-editor of The American Journal of Bioethics and thus on numerous editorial materials produced for that venue and also as a close friend and close reader when called upon.

This book would never have happened but for the generous contributions of the Francis Foundation and the John B. Francis Chair in Bioethics at my scholarly home, the unique Center for Practical Bioethics and the assistance and guidance of my colleagues there including Myra Christopher, President.